The Subverting of the ME/CFS Mind

August 23, 2013

by Jody Smith

Of all the things ME/CFS is responsible for causing in our brains, this may be one of the biggest. Before I was lambasted by ME/CFS, I was an idealistic and trusting sort, loyal to a fault. I tried to see the best in people, tried to give the benefit of the doubt.

My soft malleable center has been pretty well kicked out of me over these many years of sickness. Along with the illness, there came a new world view, if you will. Because as the sickness settled in for a long stay, the people in my life gradually disappeared out the back door, never to return. And the Canadian government that prides itself on its humane safety net has let me down at every turn.

The fact that I am one among countless chronically ill people in my country, and the fact that there are countless more around the globe equally abandoned by their governments, only entrenches my shift from trust to cynicism.

When you know that your government will do nothing for you, and when you know that many of the people you knew don’t care whether you eat or starve, whether you have a roof over your head or you don’t … These pellets of hard truth left some pretty serious dents in my psyche as I was bombarded with them for years.

Even if I were to regain my health completely one day, with an income big enough and dependable enough to protect me from panic and sleepless nights, I am irrevocably changed. I will never see things the same again. And I don’t want to.

My son Jesse was a lot like me before he became ill at age 16. For the first few years of his illness, basic survival was predominantly his focus … if focus is a word you can use in connection with someone severely ill with ME/CFS. As his health improved somewhat, and his brain started working again somewhat, he also began to take a new and unpleasant look around. He also did not much like what he was seeing.

Way to go, powers that be. You have allowed thousands upon thousands of loyal citizens to see beyond your public relations, you have let it slip that they have no value to you. And they’ll never offer up their unquestioning loyalty again. Not to you.

It’s a common story, unfortunately. Solid citizen gets sick, no longer can carry their own weight, no longer can meet their financial obligations. The assumption for many people – and I was one of them – is that there is some type of intervention in place to keep them from plummeting to destruction.

But the safety net of welfare or disability pensions wasn’t there for me, or my family. And as the past connections in my life disappeared, and I was no longer able to see or talk to or work with old friends and family … well, there’s hardly anybody to even witness the decline that follows.

The loneliness can be excruciating, and I am saying this as a person with family members living with me. I can’t imagine what it’s like for those who must live alone. The realization of being entirely dispensable and not worthy of concern, or taking a look in on, causes a shrinking effect within and there is no one there to counteract it.

So when you don’t have enough money to pay your bills or buy your food, there is also no one there to be horrified for you, to be outraged or to sound an alarm on your behalf. If all you can do is drape yourself over your bed unable to lift a hand, then exactly nothing is going to happen. Period.

And the slow, inexorable, devastating ruinous cascade is set in motion. You cannot protect yourself and nobody is there to notice or to do it for you.

Nobody knows that you have lost so much weight you’ve now developed new medical problems. Nobody knows you can’t sleep and that this insomnia is heightened by an exquisite terror of what tomorrow will bring and how you will be able to survive it.

Neighbors may be passing by your house every day, going about their own business, unaware of or uninterested in the fact that you are losing the battle for survival. You are unable to call out to them and after a while you may begin to believe what everything around you is shoving in your face — that you really don’t have a right to the time, attention and ministrations of other busy normal people anyway. You have no currency with this world.

Our daily touch stones are fury and terror. Time does not make them easier to swallow. This is a slice of life that will change you from the marrow on out.

I have been very lucky. I have had some people clamber over the barriers to come get me. It’s still been unbelievably hard but it seems that the worst of the worst is behind me.

But there are so many who are sick with ME/CFS that are still bound and gagged in this twilight horror of a life. And they are very often without help of any kind from the people around them who could make a difference if they gave it any thought.

These fragile ones are often without assistance from the government that pretends to value its citizens and yet kicks its most vulnerable and helpless squarely in the teeth every day with no hope for anything better in the future.

Good work, governments of nations, if your goal was to create people who distrust you. They are multiplying daily, perhaps one day you will even actually see them.

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Oh Jody, what a powerful piece of writing. WOW. It truly hits the mark on how badly people with this disease are treated.

This line in particular really got me: "The realization of being entirely dispensable and not worthy of concern, or taking a look in on, causes a shrinking effect within and there is no one there to counteract it."

I spent much of my first 22 years with this illness in nearly total isolation. Most of my family members and all of my so-called friends dissed, dismissed, shamed, blamed, and attacked me for being ill. I was called "pathetic," "a psyche case," "a geriatric case," "a loser," "a liar," and "a malingerer." I was accused of "not being spiritual enough," as if somehow that alleged "defect" was what was making me ill. And of course I was accused of being depressed and told to "snap out of it!" as if I could possibly do that on command.

At a certain point, after I came out of grieving the loss of my old self (which took about 7-8 years), I got very angry at how badly I had been treated by the people I thought would (and should) care about me. And that anger is what kept me alive, and kept me motivated to get what I needed to stay alive.

I know there are so many people who have had it much worse than I have. It infuriates and sickens me to think how many more will continue to suffer with this disease, and have little or no resources to care for themselves throughout their years or decades in ME/CFS hell.

Thanks Jody, I still find it very difficult to talk about this part of the illness. I can talk about the symptoms , but when it comes to talking about how I coped with the illness, I don't really want to go there. I barely got through my severe years, but so glad I held on through them. It took every ounce of guts or whatever you like to call it to get through them. I still feel a bit raw and scarred.

That hit very close to home. Wonderful article..the illness is hard enough, but no one is really prepared for literally loosing everything else besides your health. I was 18 and at my prime when i was hit with the sickness, and it was horrifying to see how many of my 'friends'..even family members, just didn't care. It was a big realization being in the hospital, and only having 2 visitors, when I was once a social butterfly who knew everyone. Without my immediate family, and my only friend that stuck by me, i don't know what I would have done.

Thanks Jody, I still find it very difficult to talk about this part of the illness. I can talk about the symptoms , but when it comes to talking about how I coped with the illness, I don't really want to go there. I barely got through my severe years, but so glad I held on through them. It took every ounce of guts or whatever you like to call it to get through them. I still feel a bit raw and scarred.

Rosie

I understand. When I was in the worst of it I found it very difficult to talk about too. I think one of the reasons I am compelled to write about it is that I remember what it is like to be so vulnerable, so helpless and so invisible. And I know there are countless numbers of us still going through that. When people go through something so crushing, and live in fear and desolation with no end in sight, it can't be allowed to go on as if it's nothing. Something so terrible needs to be heard, needs to make ripples in the outside world.

That hit very close to home. Wonderful article..the illness is hard enough, but no one is really prepared for literally loosing everything else besides your health. I was 18 and at my prime when i was hit with the sickness, and it was horrifying to see how many of my 'friends'..even family members, just didn't care. It was a big realization being in the hospital, and only having 2 visitors, when I was once a social butterfly who knew everyone. Without my immediate family, and my only friend that stuck by me, i don't know what I would have done.

xxRinxx

I so understand. There is no pain quite like the hurt that comes when people you thought were there for you … are not. That they can just so easily walk away. There are people who live in my area that I know, if I were to pick up the phone now that I am healthier, would be happy to just pick up where we left off, as if my life hadn't been shattered, as if I hadn't lived in agony that they could have helped allay but they didn't feel like it. I won't be calling those people. Ever.

Thanks Jody, I still find it very difficult to talk about this part of the illness. I can talk about the symptoms , but when it comes to talking about how I coped with the illness, I don't really want to go there. I barely got through my severe years, but so glad I held on through them. It took every ounce of guts or whatever you like to call it to get through them. I still feel a bit raw and scarred.

Thinking more about what you said … You find it difficult to talk about, and you shouldn't have to talk about it. You are ill, you are dealing with so much just to survive. And even if you could talk about it the nature of this thing is such that there's no way to know how it will be received, whether the response, or lack of it, will leave you feeling worse because it becomes one more instance of seeing how little you are respected, believed or cared for.

I was asked to be on a panel a few years ago, talking about poverty. At the time, I was not quite strong enough, not quite ready to go that public in my own community. And, I was still struggling mightily against poverty, frequenting the food bank, juggling bills … Still being in the midst of it I just could not speak. That was three years ago. We have been walking out of our poverty and partly because of that distance between where we are now and where we were then, it would be far easier to talk about it now.

It's so hard when you're still in the midst of it all. So that's when those of us who are a little healthier — who have been through it but are not so immersed in it now — that's where we come in. And we open our mouths and won't shut them.

A subversion of the mind … Indeed. Its natural tendency to rely on the "Other" goes astray – the human is a social animal, said one philosopher, – provided he is not sick for a too long time, so it seems! The problem is not the illness, it is its duration… I have become cynical in my own way, perhaps a darker form of cynicism than yours – along the lines of: no one out there was ever born in order to take care of me. That way, I can detach. But that is probably just my mind attempting to play tricks on my deeply rooted social needs.

I prefer your cynicism, which brings out what human bonds should be about (and what governments should do – I live under the same as yours by the way) . Sometimes I wonder what's worse: Having an illness poorly recognized and researched by the medical Establishment? – Or slowly fading out of existence before your own entourage? When you are becoming Nobody even to thy Neighbor? (I like how you juxtapose the terms). I guess the latter is what hurts most, actually I'm pretty sure of it, – but the former is a damn important issue to address as well!

Thanks for cleverly pointing in both directions simultaneously, because those two put together really do a job at leaving some "pretty serious dents" as you say in our fragile psyches.

This article brought tears to my eyes, its so true. Thank you for writing it Jodie, its such an important article. Thank you to PR for allowing such an article to be posted (Im sick of all the postive articles at other ME/CFS places where its like the truth is put aside. I cant resonate to those at all).

"At a certain point, after I came out of grieving the loss of my old self (which took about 7-8 years), I got very angry at how badly I had been treated by the people I thought would (and should) care about me. And that anger is what kept me alive, and kept me motivated to get what I needed to stay alive. "

Im the same as Dreambirdie, Ive done all my life grieving and now just feel so angry at the unfair things I and the rest of us suffer. Unfortunately I too used to look upon this world with very gentle eyes, I was an extremely gentle soul who was focused on goodness and this illness has made me have to change, a gentle soul can hardly survive in the world of ME. To survive in this world with this illness, you need toughness, you need to be able to make strong demands to get needs met as other things dont work. Many of us need to be angry to have any hope at all.

"I am irrevocably changed. I will never see things the same again."

Ive seen that this world isnt the place I once thought it was but rather is a harsh place where people can turn their backs on the very sick as if they dont exist. I dont like the world around me much anymore due to what Ive seen (I like myself thou as i know it isnt me).

I was an expeditor, I always looked for answers , new ways of solving problems, making things work but I can't fix this illness and time is running out. I am angry at family, medical profession and government. I'm angry that even though I did everything to have a nice home since I'm house-bound, I don't have enough good food to eat and co-pays are eating me alive. I don't look in trouble but I am. I often thought that if things were to change like getting well and having an extra income I'd help people like us who fall through the cracks and don't look destitute but are. I'm sick of people not walking the talk, not taking that extra look to see hard times in a persons face or the hurting of their soul. Good discussion Jody.

How many more have to fall through the cracks before our collective societies wake up and see the full picture? I spoke with a young co-worker just today whose symptoms are pointing to something autoimmune. She told me how painful it is to have her immediate family and now her husband of one year discounting her symptoms. She doesn't know what it is for sure yet, but in sharing my journey with her today then coming home and reading this, I feel strengthened once again to share my story as best I can. Sometimes I feel like a Who in Whoville yelling We are here! We are here!

This illness has been a wake up call for me too. I was totally nieve about how the medical
profession viewed chronically ill patients until I became one. I'm still shocked that our governments
who are footing the bill in many cases aren't as informed about our illnesses as we are.

In a way I was lucky that I've looked near death (jaundice, grey and too thin) several times since getting this illness so many
of my freinds and family knew how sick I was. I just learned that my family considers me a burden tho. Good
ol cfs brain fog protected me from seeing that. Lol. I'm not losing sleep over it. I have my noisy neighbors
to thank for waking me up.

Meeting others with a chronic disabling illness has eliminated the isolation I felt for about 16 years.
Thanks everyone for taking the time to post on the web. Tc .. X

Bravo, Jody! A very welcome article. I can't say much, right now, because it has hit too close to home (although, that's good – I'm glad you did). I'm very fortunate in that I don't have the financial problems which so many people have and I know how fortunate I am, in that. But the people!! I've had this disease for 24 years and I've seen so many people disappear. I live alone (have an ex and an adult son who is one of the people who has pretty much disappeared).

I've lived in a condo (same country as you) for four years and, before I became almost completely housebound, last year (fortunately, there's a store right next door which I can get to once every 4 days), I was the most helpful person around here (as much as I could be) because I'm kind and compassionate and caring. I'm a human being. And, oh yeah, everyone really liked me – sure, until I wasn't around anymore. House M.D. had a saying, "Everyone lies.". I have a saying, "Everyone leaves."

After I became housebound, the people, here, disappeared – again – same thing as has happened all along. They know how ill I am but no one ever offers to bring dinner, for example, which would be such a welcome thing, once in a while. I became immediately expendable. I don't exist. Out of sight, out of mind. Some of them were my 'friends'.

I'm holding a lot of anger inside, which I never let show – not even to myself. But the article has me in tears which is a really good clue, for me, about how much anger I am holding and how much I've been repressing/suppressing it. It's probably eating me up inside but what am I supposed to do with it? I'm tired of hearing about how people don't know what to do when people are this ill. Use your imagination, people! It's not rocket science. I'm tired of hearing that people are really only concerned about themselves – well, clearly, that's true but it's not right. I'm just supposed to accept all that, which I have learned to do but that doesn't mean that I'm not mad as hell, under it all.

Luckily, I'm okay with solitude because I like myself and I know I'm a worthwhile, decent person. But I don't like the people around me who, clearly, have decided that I'm nobody, worthless, abandonable. It's hard enough dealing with this disease without having to deal with that, as well – which is why I put it out of my mind, most of the time. But it's always there, obviously, or this article wouldn't have affected me the way I has.

I too had tears come to my eyes from reading this. Not for myself, as I am a coper, and for a long time had no idea that the injustice that was happening to me was happening to so many other people. That was when I really started getting angry. Like Anabel I am OK with solitude, but I know that many people find it difficult, and are not as tough and independent as me. I am more angry for them than for myself, although I have been to hell and back a few times with this illness. At least I came back, and I know that not everyone has.

Having had no love during childhood, and been denigrated and blamed and belittled and bullied by those who had power over me, I became very solitary, self-sufficient and cynical from an early age. I was/am used to people having a negative opinion of me. Whilst that is sad, and has damaged me emotionally, it has also probably helped me to survive this illness. I started avoiding my parents before I became ill, so that was no loss. It would be nice to be able to make some new friends, but I don't have the energy to spare. One day, I promise myself. My best local friend now lives too far away to see her often. Another good friend from the past lives further away still and we have almost lost touch. I've made a couple of friends online but they also live a long way away. But I know they are there at the end of an email if I need them! That's no use for practical help, of course. I have a few other local friends, but don't feel very close to them or have much in common with them. It may sound bad, but I just keep in touch with them as they are better than no friends at all!

Like PNR2008, I have long been one to seek solutions, and I still am. With this illness there have been times when I thought there were no solutions, but not now, and thanks to places like this I am optimistic that we will defeat this thing.

I lived in poverty for 17 years, like others being constantly worried about paying bills, and unable to keep warm in winter (and that is putting it very mildly!). People have said things like "How can you cope with no heating?" I point out that the alternatives are worse: not coping, and dying from hypothermia, or having the heating on and getting into even more debt than I was already. So I coped because I had to. What else do you do?

I have been counting the years to when I would start receiving pensions, and have been angry at being forced to wish the years away rather than enjoying them. I have stayed as positive as I can, and finding enjoyment from simple pleasures, and I know I am much luckier than most with this illness, and luckier than people facing famine or war.

I am constantly frustrated at not being able to work as much as I need to, and not being able to develop a new less-strenuous business so that I can dump the current one which exhausts me. I've been trying to develop the new one since 2010 when a serious exacerbation made me realise that I couldn't cope with the strenuous one any more. But things keep getting in the way. This year it has been tinnitus, preventing me from working out the best settings for my audio recorder to record natural sounds.

But no doubt a lot of people just assume that I am sitting at home all day watching TV, rather than working from home, and that I have no motivation. I have an enormous amount of motivation!

Now things are easier at last with some small pensions. I worry for the younger ones, and hope fervently that things change before their lives become unbearable.

very well written article. isolation, depression, cynicism, depersonalization, fogginess, apathy, hopelessness, low self esteem, inability to make decisions, and feeling so confused and unsure about anything and everything…..this has been the CFS mind for me. all I can imagine doing if I were to get through this disease, is to recoil further. nothing makes sense to me now, and I cannot relate to anyone.

Jody, thats a well written article ; you are a good writer. One of the best I've read on this site. I have suffered similarly to you, but Ireland is a slightly different experience for ME patients. Ireland as you will know, is a religious country, and is very judgmental, and not surprisingly it has had a lot of conflict. There is a lot of criticism, denigrating, mocking, belittlement, bad mouthing, judgmental attitudes, bullying and actual violence used against ME patients, and against those with other disabiiities. Ireland is a more aggressive society than Canada or Britain. Religion by its nature encourages judgmental finger pointing, hatred, criticism etc. and this divides people against each other within religions and between religions, and in Ireland and other places such as the Balkans and the middle east, one sees the violent outcome of this. ME patients and other disabled people are seen as soft and vulnerable targets for those with judgmental attitudes shaped / brainwashed by religious extremists. Ireland is a very interesting country, if you want to study the middle ages and very old out dated attitudes to disability. The 2 big ME organisations in Ireland have failed to address this important issue for ME patients but I am sure the same could be said for other countries.
On a more positive and upbeat note, we are about to engage in negotiations with the Irish government and Health authority to build a national ME clinic in Ireland – our proposal is at http://www.cfs-ireland.com . Our meeting was re-scheduled in July as the government was involved in a vicious abortion law debate in parliament, and the religious freaks were going crazy throughout Ireland. Some religious freaks were threatening the government with violence. The corrupt police did not bother investigating these threats against the government. The religious freak show ended in late July as the abortion law was passed in both houses. But the religious freaks are still plotting and scheming to bring them down. By the way, these religious freaks are the same people who mock, belittle, despise, hated and judge ME patients and disabled people.

I understand. When I was in the worst of it I found it very difficult to talk about too. I think one of the reasons I am compelled to write about it is that I remember what it is like to be so vulnerable, so helpless and so invisible. And I know there are countless numbers of us still going through that. When people go through something so crushing, and live in fear and desolation with no end in sight, it can't be allowed to go on as if it's nothing. Something so terrible needs to be heard, needs to make ripples in the outside world.

Jody- I think it is hard to talk about because we know NO ONE WANTS TO HEAR IT. They are involved with their own lives. Sad. I have written off some family members and really should have done it long before I became sick. You find out who are the users and who are the givers. What is really sad is when you are too sick to drive to a Dr. and they are all too busy. Wrote them off first!!! I have had to learn what I need to worry about and what I need to let go. Sometimes that helps- Unfortunately I am every ones Rescuer -so it is hard for me.IF ONE MORE DR. TELLS ME-WELL, YOU DON'T LOOK SICK–I WILL SLAP HIM OR HER!!!!!!!

Sometimes I welcome the Isolation. It frees me to think about myself!!!!

How can I feel so far from those that surround me and so close to people here? How can people who have known me for 30 yrs shun me and when chanced upon show fear in their eyes?

Thanks Jody for you are elequently talking of the place that I find myself; memories of a previous life are gone, slipped through my fingers no matter how hard I tried to hold on. As cognitive function crumbled( HAL comes to mind) and I lost memory, judgement and even facial recognition, I lost myself.

After 8 yrs I am back and I resonate with what has been written; I fought everyone and tried everything to halt the slide, as I sank lower if it wasn't nailed down over the side it went. The lessons I learned were ones I wish I could unlearn for they shaped the new me. Likemost of us ,the world I thought I knew just folded and down I went.

My Identity had disolved and over the last few years as I got stronger I needed to build a new one. Like a surviver of hurricane or earthquake I sat dazed in the ruins, now and then you recognise something but mostly it is damaged beyond repair.

I sometimes say that 'I turned to the dark side, you do not know the power of the dark side' and it's only part in jest. I became so angry that fury would burn through me and I learned to use this, it is energy like any other. At first it would leave me drained but now I use it more skilfully.

There came a time when enough cognitive function had returned and my memories started to
flash up as vivid snapshots devoid of context or emotional attachment. It was like old pictures that contained someone who looked like me but wasn't; and they started coming faster but I had nowhere for them to go, no hooks to hang them on. I was being deluged in someone elses memories.

I found a therapist and constructed a system to manage them and the pace slowed and now it is ok. I am me and I have memories of a time before, and bit by bit more comes back to reconstruct the years but I look at the things this person did, the way he saw the world and I cannot understand him. You don't have to have ME to feel this way, but it helps.

I am not recovered but I have passed through a stage of this illness, even though I struggle with pain and mobility and Stuff I am beginning to grow into who I now am.

I have supported my daughter through 5 yrs of 'Glandular fever' and now have to supervise a work collegue with ME. I tell people that I don't 'do' sympathy but I practice compassion. I have to look after myself but I see the way my collegue is treated, how compassion fatigue is so quick to set in and how he slides into a non-person category. He describes the Drs visits and I 'know', like watching a car crash in slow motion, the disembling GP, the poorly educated OP's in thrall to the psychocharlatanism so beloved of the UK.

I always had a naive optomism thinking that I would recover if I could find the way but I didn't have the anger to say 'I'll be back' but I would just not stop and now filled with righteous anger when I step into the consulting room I feel like asking 'are you feeling lucky, …. … … ….'

I often write a post then re-read it and scrub it because though it says what I felt it seems indulgent or some such; regaining my voice my be the toughest yet.

I too had tears come to my eyes from reading this. Not for myself, as I am a coper, and for a long time had no idea that the injustice that was happening to me was happening to so many other people. That was when I really started getting angry. Like Anabel I am OK with solitude, but I know that many people find it difficult, and are not as tough and independent as me. I am more angry for them than for myself, although I have been to hell and back a few times with this illness. At least I came back, and I know that not everyone has.

Having had no love during childhood, and been denigrated and blamed and belittled and bullied by those who had power over me, I became very solitary, self-sufficient and cynical from an early age. I was/am used to people having a negative opinion of me. Whilst that is sad, and has damaged me emotionally, it has also probably helped me to survive this illness. I started avoiding my parents before I became ill, so that was no loss. It would be nice to be able to make some new friends, but I don't have the energy to spare. One day, I promise myself. My best local friend now lives too far away to see her often. Another good friend from the past lives further away still and we have almost lost touch. I've made a couple of friends online but they also live a long way away. But I know they are there at the end of an email if I need them! That's no use for practical help, of course. I have a few other local friends, but don't feel very close to them or have much in common with them. It may sound bad, but I just keep in touch with them as they are better than no friends at all!

Like PNR2008, I have long been one to seek solutions, and I still am. With this illness there have been times when I thought there were no solutions, but not now, and thanks to places like this I am optimistic that we will defeat this thing.

I lived in poverty for 17 years, like others being constantly worried about paying bills, and unable to keep warm in winter (and that is putting it very mildly!). People have said things like "How can you cope with no heating?" I point out that the alternatives are worse: not coping, and dying from hypothermia, or having the heating on and getting into even more debt than I was already. So I coped because I had to. What else do you do?

I have been counting the years to when I would start receiving pensions, and have been angry at being forced to wish the years away rather than enjoying them. I have stayed as positive as I can, and finding enjoyment from simple pleasures, and I know I am much luckier than most with this illness, and luckier than people facing famine or war.

I am constantly frustrated at not being able to work as much as I need to, and not being able to develop a new less-strenuous business so that I can dump the current one which exhausts me. I've been trying to develop the new one since 2010 when a serious exacerbation made me realise that I couldn't cope with the strenuous one any more. But things keep getting in the way. This year it has been tinnitus, preventing me from working out the best settings for my audio recorder to record natural sounds.

But no doubt a lot of people just assume that I am sitting at home all day watching TV, rather than working from home, and that I have no motivation. I have an enormous amount of motivation!

Now things are easier at last with some small pensions. I worry for the younger ones, and hope fervently that things change before their lives become unbearable.

Me Sci- What a beautiful written Post. How great that you are still inventing and still viable. These are wonderful traits to have. What type of treatment regimen are you on now? You can Personal message me if you want.

How can I feel so far from those that surround me and so close to people here? How can people who have known me for 30 yrs shun me and when chanced upon show fear in their eyes?

Thanks Jody for you are elequently talking of the place that I find myself; memories of a previous life are gone, slipped through my fingers no matter how hard I tried to hold on. As cognitive function crumbled( HAL comes to mind) and I lost memory, judgement and even facial recognition, I lost myself.

After 8 yrs I am back and I resonate with what has been written; I fought everyone and tried everything to halt the slide, as I sank lower if it wasn't nailed down over the side it went. The lessons I learned were ones I wish I could unlearn for they shaped the new me. Likemost of us ,the world I thought I knew just folded and down I went.

My Identity had disolved and over the last few years as I got stronger I needed to build a new one. Like a surviver of hurricane or earthquake I sat dazed in the ruins, now and then you recognise something but mostly it is damaged beyond repair.

I sometimes say that 'I turned to the dark side, you do not know the power of the dark side' and it's only part in jest. I became so angry that fury would burn through me and I learned to use this, it is energy like any other. At first it would leave me drained but now I use it more skilfully.

There came a time when enough cognitive function had returned and my memories started to
flash up as vivid snapshots devoid of context or emotional attachment. It was like old pictures that contained someone who looked like me but wasn't; and they started coming faster but I had nowhere for them to go, no hooks to hang them on. I was being deluged in someone elses memories.

I found a therapist and constructed a system to manage them and the pace slowed and now it is ok. I am me and I have memories of a time before, and bit by bit more comes back to reconstruct the years but I look at the things this person did, the way he saw the world and I cannot understand him. You don't have to have ME to feel this way, but it helps.

I am not recovered but I have passed through a stage of this illness, even though I struggle with pain and mobility and Stuff I am beginning to grow into who I now am.

I have supported my daughter through 5 yrs of 'Glandular fever' and now have to supervise a work collegue with ME. I tell people that I don't 'do' sympathy but I practice compassion. I have to look after myself but I see the way my collegue is treated, how compassion fatigue is so quick to set in and how he slides into a non-person category. He describes the Drs visits and I 'know', like watching a car crash in slow motion, the disembling GP, the poorly educated OP's in thrall to the psychocharlatanism so beloved of the UK.

I always had a naive optomism thinking that I would recover if I could find the way but I didn't have the anger to say 'I'll be back' but I would just not stop and now filled with righteous anger when I step into the consulting room I feel like asking 'are you feeling lucky, …. … … ….'

I often write a post then re-read it and scrub it because though it says what I felt it seems indulgent or some such; regaining my voice my be the toughest yet.

Me Sci- What a beautiful written Post. How great that you are still inventing and still viable. These are wonderful traits to have. What type of treatment regimen are you on now? You can Personal message me if you want.

A lot of very talented writers on this Post.

San Diego #1

San Diego #1

Thank for the compliments! :redface:

I'm on a leaky gut diet and supplements, and pacing as stringently as I can when life doesn't get in the way!

Lots of people go through difficult things in life. Some worse than ME/CFS. No one is exempt from tragedy – the problem comes with thinking life owes us something. Life is what it is, and usually that is shit and suffering, as the Buddha told us. Nothing owed, no guarantees.

Note: just to say that doesn't mean I want to minimize anyone's suffering. I think it sucks, too.

I'm just too tired right now to expound but spot on girlfriend! That one part about hearing the neighbors go about their daily routine and they dont seem to care. I hvae sahred vegetables from my garden when I use to be able to have one. But no one seems to give a rats behind if Im alive. Ive been in this neighborhood 24 years. Im in the coutry to the south of you and my eyes have also been open never to see the same again. Stunning the people who claim to be friends and cared about you….I guess that only applies if you are well. Yes it is so hard, we get tired of talking about it but we are so isolated when we do get around people just feel my social skills have atrophied also. Thank you for writing this, I have been sharing some of my frustrations and anger in threads lately, I too use to be more forgiving and compassionate but how being unwell changes a person and those around them is stunningly sad. I'm glad this will be here on PR for posterity.

Lots of people go through difficult things in life. Some worse than ME/CFS. No one is exempt from tragedy – the problem comes with thinking life owes us something. Life is what it is, and usually that is shit and suffering, as the Buddha told us. Nothing owed, no guarantees.

Note: just to say that doesn't mean I want to minimize anyone's suffering. I think it sucks, too.

Jeff- no one expects any guarantees- however, I do think we should at least expect the Medical community to
acknowledge WE ARE SICK !!! I am to the point that I don't even tell them I have CFID as they quit asking questions
and have actually after 10min say " I can't do anything for you". Doesn't matter what part of the body you are having a problem with.

I also know as I do Animal Rescue- there are some wonderful, caring people out there. Even if you do one nice unexpected thing for them-it always comes back to you in a good way.!!!! I have actually started writing HERO letters to people from my past that have been heros to me. Even from when I was a child. You would not believe how that touches someone. They mattered-so I matter.!!!!!
Stay Well.

Jeff- no one expects any guarantees- however, I do think we should at least expect the Medical community to
acknowledge WE ARE SICK !!! I am to the point that I don't even tell them I have CFID as they quit asking questions
and have actually after 10min say " I can't do anything for you". Doesn't matter what part of the body you are having a problem with.

I also know as I do Animal Rescue- there are some wonderful, caring people out there. Even if you do one nice unexpected thing for them-it always comes back to you in a good way.!!!! I have actually started writing HERO letters to people from my past that have been heros to me. Even from when I was a child. You would not believe how that touches someone. They mattered-so I matter.!!!!!
Stay Well.

How can I feel so far from those that surround me and so close to people here? How can people who have known me for 30 yrs shun me and when chanced upon show fear in their eyes?

Thanks Jody for you are elequently talking of the place that I find myself; memories of a previous life are gone, slipped through my fingers no matter how hard I tried to hold on. As cognitive function crumbled( HAL comes to mind) and I lost memory, judgement and even facial recognition, I lost myself.

After 8 yrs I am back and I resonate with what has been written; I fought everyone and tried everything to halt the slide, as I sank lower if it wasn't nailed down over the side it went. The lessons I learned were ones I wish I could unlearn for they shaped the new me. Likemost of us ,the world I thought I knew just folded and down I went.

My Identity had disolved and over the last few years as I got stronger I needed to build a new one. Like a surviver of hurricane or earthquake I sat dazed in the ruins, now and then you recognise something but mostly it is damaged beyond repair.

I sometimes say that 'I turned to the dark side, you do not know the power of the dark side' and it's only part in jest. I became so angry that fury would burn through me and I learned to use this, it is energy like any other. At first it would leave me drained but now I use it more skilfully.

There came a time when enough cognitive function had returned and my memories started to
flash up as vivid snapshots devoid of context or emotional attachment. It was like old pictures that contained someone who looked like me but wasn't; and they started coming faster but I had nowhere for them to go, no hooks to hang them on. I was being deluged in someone elses memories.

I found a therapist and constructed a system to manage them and the pace slowed and now it is ok. I am me and I have memories of a time before, and bit by bit more comes back to reconstruct the years but I look at the things this person did, the way he saw the world and I cannot understand him. You don't have to have ME to feel this way, but it helps.

I am not recovered but I have passed through a stage of this illness, even though I struggle with pain and mobility and Stuff I am beginning to grow into who I now am.

I have supported my daughter through 5 yrs of 'Glandular fever' and now have to supervise a work collegue with ME. I tell people that I don't 'do' sympathy but I practice compassion. I have to look after myself but I see the way my collegue is treated, how compassion fatigue is so quick to set in and how he slides into a non-person category. He describes the Drs visits and I 'know', like watching a car crash in slow motion, the disembling GP, the poorly educated OP's in thrall to the psychocharlatanism so beloved of the UK.

I always had a naive optomism thinking that I would recover if I could find the way but I didn't have the anger to say 'I'll be back' but I would just not stop and now filled with righteous anger when I step into the consulting room I feel like asking 'are you feeling lucky, …. … … ….'

I often write a post then re-read it and scrub it because though it says what I felt it seems indulgent or some such; regaining my voice my be the toughest yet.

Me& Cat- I often write a post and forget I wrote it. Read it later and wonder who that person is-sounds familiar!!!

Ha!!!! Think I have already written this but just in case. I could not find Peanut Butter the other day and my husband said (SARCASTIC) are you sure you didn't put in the freezer? I told him NO-THAT IS WHERE I KEEP MY CELL PHONE!!!

very well written article. isolation, depression, cynicism, depersonalization, fogginess, apathy, hopelessness, low self esteem, inability to make decisions, and feeling so confused and unsure about anything and everything…..this has been the CFS mind for me. all I can imagine doing if I were to get through this disease, is to recoil further. nothing makes sense to me now, and I cannot relate to anyone.

Daffodil- You are wrong. You just related to me. Start a Journal- even if it is a sentence.
People do care- I care!!!!!

MeSci- The Pacing is the hardest for me-as I like to finish what I start. Not possible anymore -or I am in beds for days.

What type of diet for Leaky Gut? I am on Gluten free and no friend foods. Sometmes works sometimes not. Probiotic VSL#3 6 a day.

Enjoy your comments.

San Diego #1

I am already vegan, so no dairy, but the changes I made for leaky gut were to cut out gluten and reduce sugar and grains.

Supplements are l-glutamine, sodium bicarbonate, omega-3, bone minerals (to replace those apparently lost in urine), alpha-lipoic acid and acetyl-l-carnitine. I can't remember what I started taking them all for except the first two: l-glutamine for healing the gut and sodium bicarbonate for reducing acidity.

Not sure if I have seen you in any of the threads in this section but they will probably interest you:

I'm not cutting these at all, as I think it's carbs that are the enemy rather than fats. However, I have switched from olive oil to coconut oil as I understand that it is more stable and less likely to produce harmful (oxidised?) breakdown products when heated.

I am already vegan, so no dairy, but the changes I made for leaky gut were to cut out gluten and reduce sugar and grains.

Supplements are l-glutamine, sodium bicarbonate, omega-3, bone minerals (to replace those apparently lost in urine), alpha-lipoic acid and acetyl-l-carnitine. I can't remember what I started taking them all for except the first two: l-glutamine for healing the gut and sodium bicarbonate for reducing acidity.

Not sure if I have seen you in any of the threads in this section but they will probably interest you:

I'm not cutting these at all, as I think it's carbs that are the enemy rather than fats. However, I have switched from olive oil to coconut oil as I understand that it is more stable and less likely to produce harmful (oxidised?) breakdown products when heated.

MeSCI- Yes it was fried foods( you mean you don't understand CFID talk???) Ha. I will go to that website. Interesting about the Olive Oil and Coconut instead. May try that.
Are you using the Krill oil for Omega 3's? I have done well with the VSL#3 for Gut. But also cut out dairy..
When you say sodium bicarbonate-do you just mean baking soda or a capsule supplement?

MeSCI- Yes it was fried foods( you mean you don't understand CFID talk???) Ha. I will go to that website. Interesting about the Olive Oil and Coconut instead. May try that.
Are you using the Krill oil for Omega 3's? I have done well with the VSL#3 for Gut. But also cut out dairy..
When you say sodium bicarbonate-do you just mean baking soda or a capsule supplement?

Great article. I think a lot of the attitude comes from the good old Protestant work ethic. As long as you're able to pull your weight, you're all right, but if you can't, then you're lazy. Never mind that the Christian thing to do is take care of the least of your brothers.

At any rate, this is exactly the reason I am volunteering to help Phoenix Rising with various tasks, so they will have the time to get the Community Rising website up and running. We won $10k in the Chase Giving contest last year to do this project. So we have the money, it's just a lack of volunteers that's preventing the project from moving forward.

The Community Rising website/app will connect PWC's with existing resources in their community. So you need a ride to the doc, or you need some groceries or your house cleaned or whatever, you can find it on Community Rising.

If you want to volunteer, contact the moderators and I'm sure they will be overjoyed to have your help.

I'm volunteering to help proofread and edit articles such as the one that Jody just wrote. They ask that you know Wordpress, but I wouldn't let that stand in your way as a deterrent if you have editing skills. Wordpress is easy to learn and I would be happy to walk anyone through it.

Lots of people go through difficult things in life. Some worse than ME/CFS. No one is exempt from tragedy – the problem comes with thinking life owes us something. Life is what it is, and usually that is shit and suffering, as the Buddha told us. Nothing owed, no guarantees.

Note: just to say that doesn't mean I want to minimize anyone's suffering. I think it sucks, too.

Hi jeffrez. On the surface, this looks like a slightly dismissive post, but I think perhaps you are philosophising, and presenting a cognitive mechanism for coping with adversity? I sometimes feel guilty when I'm struggling emotionally with my situation and at those times I question whether I can't justify my negative emotions because there are people worse off than me. But guilt isn't a healthy or productive emotion, so I dismiss those thoughts, and allow myself to have my naturally-arising emotions, and to process them in my own way, whilst trying to keep some perspective at the most difficult times. So I acknowledge what you've said, and I understand it, but it's too simplistic an approach for my own needs. I suppose each of us on this planet has to find our own way to cope with our lives and our emotions, and this will often change from situation to situation for each person. (I personally find that acknowledging any personal difficulties, and allowing myself to experience any naturally arising negative emotions, without any guilt, allows me to process my emotions and move forwards.)

Another thing that gets to me is that no one is likely to even notice if I die (I live alone.) That does haunt me a bit and I email a friend every day as a safeguard–if she doesn't get an email she'll call to check.

One thing that helps me deal with my situation is the historical perspective–not on ME/CFS but on life's conditions. Historical novels are an easy way to get a peek at what it was like to be poor or poor and sick in less "enlightened" eras. (and yes, I have time to read! :rolleyes:) I don't think there ever has been much regard for life in any society I am familiar with.

No excuses for what happens today, but I feel less "alone" with the disregard.

Lots of people go through difficult things in life. Some worse than ME/CFS. No one is exempt from tragedy – the problem comes with thinking life owes us something. Life is what it is, and usually that is shit and suffering, as the Buddha told us. Nothing owed, no guarantees.

Note: just to say that doesn't mean I want to minimize anyone's suffering. I think it sucks, too.

Hi jeffrez. On the surface, this looks like a slightly dismissive post, but I think perhaps you are philosophising, and presenting a cognitive mechanism for coping with adversity? I do sometimes feel guilty when I'm struggling emotionally with my situation, and at those times I think to myself that I can't justify my emotions because there are people worse off than me. But guilt isn't a healthy or productive emotion, so I dismiss those thoughts, and allow myself to have my naturally-arising emotions, and to process them in my own way, whilst trying to keep some perspective at the most difficult times. So I acknowledge what you've said, and I understand it, but it's too simplistic an approach for me. Each of us on this planet has to find our own way to cope with our lives and our emotions, and this will often change from situation to situation for each person. (I personally find that acknowledging any personal difficulties, and allowing myself to experience any naturally arising negative emotions, without any guilt, allows me to process my emotions and move forwards.)

Bob, If you have a secret on how to process emotions, please let me in on it! Mine, I feel I can only withstand them – or not … I can certainly process my thoughts, but how I feel is another story. I believe there was a tad of humor in Jefferz' quote of Buddha, and every now and then, this attitudes helps me; when I crash for the fifth time in a same month, if I let my emotions naturally evolve, if I let them "be" , despair would become all-overwhelming, and in such times resorting to a philosophical commonplace à la " what can you do, life's a bitch" , can be helpful! (at least temporarily).
Agreed, a cognitive defensive mechanism no less, or differently put, dark humor before adversity.

One thing that helps me deal with my situation is the historical perspective–not on ME/CFS but on life's conditions.

Thanks Jody for your eloquent article; and thanks to everybody here for your eloquent comments. — Sushi, I have a hard time reading, but I do watch a lot of PBS specials these days. I too find it helpful to look at things from a historical perspective, and often find myself comparing my current health challenges with some of the difficult adversities people all over the world have lived with seemingly forever, and still do to this day. Makes me realize that nobody escapes a lifetime here without some sort of major challenges along the way, whether physical, mental, emotional, psychological, or more often than not, a combination of them all. — It seems we're all at times like a child in the wilderness.

Bob, If you have a secret on how to process emotions, please let me in on it! Mine, I feel I can only withstand them – or not … I can certainly process my thoughts, but how I feel is another story. I believe there was a tad of humor in Jefferz' quote of Buddha, and every now and then, this attitudes helps me; when I crash for the fifth time in a same month, if I let my emotions naturally evolve, if I let them "be" , despair would becoming all-overwhelming, and in such times resorting to a philosophical commonplace à la " what can you do, life's a bitch" , can be helpful! (at least temporarily).
Agreed, a cognitive defensive mechanism no less, or differently put, dark humor before adversity.

Yep, we all do what works best for us.
I just do what works for me, but I don't always cope well.
I often do find a way to 'process' my emotions, or work through them (i.e. try to find a way to live with them or accept them), but I can't offer any pearls of wisdom.
A few months ago I had a huge crash, after which I experienced massive levels of negative emotions…
Anger, bitterness, frustration, resentment, guilt, etc etc.
And they didn't disappear quickly.
But I felt that perhaps they helped me get through a difficult period.
Being angry at the world is sometimes better than feeling defeated.
They didn't seem like self-destructive emotions, so I went along with them, and I think they were even empowering.
But, yes, negative emotions can eat you up, and I've had my fair share of long-lasting depression in the past, before I ever had ME. I couldn't 'process' (work through) the depression, and it did not go away. It was very destructive, very negative, and impossible to cope with. Nothing positive about it at all.
So I guess I was only talking about my recent experiences with emotions, and not my general experiences.
I hope my previous post didn't sound preachy. It wasn't meant to be. I've just read it back and it seems a bit preachy.

Bob NO, it didn't sound preachy. I know what you mean about letting emotions process through you. If I try to make them go away, it always makes them worse. The resistance amplifies them.

Usually I am able to process my emotions the best through creative activity, like music and especially painting, which brings me enormous relief and release. I highly recommend process painting for anyone who is able to do it. It has saved me from despair and angst and agitated fury on many occasions.

When I'm at my worst, and have no energy at all for creative pursuits, I will lay down and stare out my window at the sky and just surrender to death. I imagine myself out of my body, far far away from the earth and free of all the suffering of life. That almost always makes me feel better, probably because there's genuine relief in knowing that one day this physical existence and all the misery of this horrible illness really will be over. I don't feel morbid when I go into that space. In actuality I end feeling lighter and happier from the surrender of my angst. Strange how that works. More proof that resistance is one of the worst enemies to anyone in pain.

Another thing that gets to me is that no one is likely to even notice if I die (I live alone.) That does haunt me a bit and I email a friend every day as a safeguard–if she doesn't get an email she'll call to check.

One thing that helps me deal with my situation is the historical perspective–not on ME/CFS but on life's conditions. Historical novels are an easy way to get a peek at what it was like to be poor or poor and sick in less "enlightened" eras. (and yes, I have time to read! :rolleyes:) I don't think there ever has been much regard for life in any society I am familiar with.

No excuses for what happens today, but I feel less "alone" with the disregard.

Sushi

I think that there are a lot of people who do have a regard for others, but that modern society is so focused on acquisition and self-aggrandisement that it has become the norm not to think of 'invisible' sections of society. People can even feel embarrassed about deviating from this norm and going to someone's aid, especially a stranger. Modern expressions like 'do-gooder' and 'worthy' used in a negative sense are illustrations of this perverse norm.

Instead of communities we have individual households, where the doors are closed and the TV and computers on, and people are blissfully unaware of what is going on outside their little nucleus.

I like living alone, but hate the thought of dying alone, and the possibility was brought home to me in 2007 and 2010 when I had my episodes of severe hyponatraemia (almost certainly resulting from prolonged stress and repeated over-exertion). The first time I was left alone by the paramedics after an hour of psychologising, and I really feared that I might die alone, being unable to get a reply on the phone from any friends and having increasing difficulty in actually lifting the phone, dialling and speaking.

The second time, I bypassed the GP who had been the source of the psychologising, and was taken to hospital, so at least I was no longer alone, even if the docs hadn't a clue what to do with me.

Almost always, I would say. Anger can be very empowering, and if it's appropriately channeled can be very effective.

I don't think guilt is a good one but does need to be faced and dissected. Why do I feel guilty? Should I feel guilty? I only feel guilty over a few things I have done that have hurt others over the years, and over which I think guilt is appropriate. The crucial thing is not to let it eat you up. Better to try to make amends in some way, if not possible re the affected individual, then by helping someone else in some way. It could be by just donating to a charity, writing to a politician, etc. But the guilt will still probably resurface. I know someone who was looking after a child when the child ran in front of a car and was killed. It probably wasn't her fault. She always greets you with a friendly smile, but she drinks to try to cope with that guilt. I'm sure it will never leave her. That moment changed her for ever.

Bob

But, yes, negative emotions can eat you up, and I've had my fair share of long-lasting depression in the past, before I ever had ME. I couldn't 'process' (work through) the depression, and it did not go away. It was very destructive, very negative, and impossible to cope with. Nothing positive about it at all.

Yes, depression is a bastard, and all bad in my view. I think that the fact that you can't work through it is actually definitive. I've been there and it nearly did for me.

I was shocked how well you set down the thoughts that have been running through my mind.

All the people who have disappeared from my life, who in all these years have not even once stopped, looked back and wondered why is there an empty chair beside them. The medical personal, who instead of working with me to help me have made themselves my enemy.

I became bitter and cynical since I've been ill.

Dying is scary, but everyone dies. Dying while you're still alive is something no one should experience.

Thanks Jody for your eloquent article; and thanks to everybody here for your eloquent comments. — Sushi, I have a hard time reading, but I do watch a lot of PBS specials these days. I too find it helpful to look at things from a historical perspective, and often find myself comparing my current health challenges with some of the difficult adversities people all over the world have lived with seemingly forever, and still do to this day. Makes me realize that nobody escapes a lifetime here without some sort of major challenges along the way, whether physical, mental, emotional, psychological, or more often than not, a combination of them all. — It seems we're all at times like a child in the wilderness.

One thing that has touched me emotionally this last month is -We have had a close friend die every week of August of different things. Some quick, some unexpected, A Wasp sting (allergic reaction). Another Massive Heart attack at a family reunion-getting into his boat.This puts things in prospective. All of these people were wonderful friends and we are still reeling from their deaths. PASSION SEPARATES THE WINNERS FROM THE WHINERS.
A LOT OF PEOPLE ARE WORSE THAN WE ARE.

Jody thanks. Your writing touched and resounded in my heart, and what others have said here about being alone and fearing dying alone.

I have known a sense of rejection since I can remember, since my family said I was a hypochondriac, refusing to understand my sickness was due to mercury poisoning as a baby (not innoculations). Since I can remember, I have had immune and endocrine disruption, frequent chest infections, foggy brain, joint problems and depression. When I said I felt ill, I got 'that look' and would be told to take an asprin. Even when something serious happened, like when a dentist had to resuscitate me after administrating nitrous oxide, no investigations took place to see what was wrong with me. Later when I grew up, people disappeared one by one or treated me with disdain until I was left in total isolation.

I don't want it to destroy me any longer. I don't want to use up the energy that I need to survive, on of grief and despairing emotions . I want to feel anger for others in my situation but I want to find peace for myself that does not depend on recovery. I will continue to do what I can for healing, with diet and supplements, but it might not happen. Sixty three years is a long time to be sick.

Other people have been transformed in terrible circumstances with no hope. Like in concentration camps. It has helped so far, to put some beauty into my life. Listening to J S Bach's sacred music has lifted my spirits. Taking a short walk each sunny day, barefoot across grass to a playpark where a tire swing gives me the chance of some sun exposure, and a relaxing ten minutes swinging, then picking and smelling a rose on the way back, gives me great pleasure.

I know I can be transformed, and find peace and have faith that God can help me. I have had many spiritual struggles, trying to make sense of my life, but I see that I must put that behind me now.

For all of those people including family who have deserted, I must let them depart in peace. I can feel that it is possible. Acceptance is the key. It's not what happens to us but how we react that counts and my sickness is not going to win.

It really helps to hear of the same struggles from others. I am angry that people can be just left to rot. But for me, I must let it go to overcome it. Thanks agin Jody I am happy for you that you recovered.

For all of those people including family who have deserted, I must let them depart in peace. I can feel that it is possible. Acceptance is the key. It's not what happens to us but how we react that counts and my sickness is not going to win.

Hi Brenda, thanks much for your post. Many of your thoughts and sentiments seem very similar to some of mine. I’ve not really had a lot of instances where I felt a lot of anger for the way others treated me regarding my health challenges. In the early 1980's when my challenges began in earnest, there was far less known about CFS by the general population than there is today. And I somehow got it very early on that most people were never going to understand what I was going through, and so my expectations were always very low to begin with.

But I’ve had other situations occur in my life that have stirred a lot of anger and sense of betrayal for me, mostly from mean-spirited actions by some of my siblings. But like you, I don’t feel it’s beneficial for me to hold onto that anger, and feel it’s important to look for ways to restore my own sense of peace and harmony in whatever ways I can. I read once, and have come to believe, that the consequences of holding onto “justifiable” anger are no different than holding onto unjustifiable anger. The body, mind, emotions, etc. are pretty much affected similarly, and not in a good way.

Speaking for myself only, I’ve realized that holding onto any kind of anger is akin to “an expensive luxury”. It may make me feel better temporarily, and perhaps even give me a sense of recovering a power lost, but I’ve generally found these to be fleeting experiences. Even more importantly for myself, I’ve come to a firm belief that if thinking of somebody causes me to become angry, and/or disturbed in any manner, then I’m in a sense giving them control over my life. This is the very last thing I want to do, especially since some of these kinds of people have the profile of an “energy parasite”, who often, whether consciously or unconscsiously, try to feed off of others’ anger.

There’s been several references to dying on this thread. I’ve read [and believe] that what we’re thinking and feeling at the time of our translation to the other side to a large extent determines what our experiences will be once we arrive there. If true, my choice would be to find myself in a spiritual environment of love, upliftment and adventure. My hope is that I’ll smooth over enough of my own rough edges to have earned this. So I strive to find as much love, harmony, and laughter in my daily life as possible, and to feel a genuine gratitude for what I do have. It’s not always easy, especially on my more difficult days. But I try not to be too hard on myself if I don't always cope as well as I would have liked. If there’s one thing I feel I’ve learned from this illness, it’s to take life moment by moment. And to give myself [and others] as much leeway as I can muster along the way.

We have had a close friend die every week of August of different things. Some quick, some unexpected. …… All of these people were wonderful friends and we are still reeling from their deaths.

So sorry to hear about your dear friends. This would be hard enough to deal with if a person were healthy. It's even more difficult to deal with when we're so ill. — My condolences for the loss of these wonderful people in your life.

I used to practise a lot of mindfulness meditation before I became ill.
It teaches you to become fully aware of your emotions but to avoid feeding or escalating them.
I've kept some of the lessons with me, which can be helpful in every day life.

A key part of mindfulness meditation is to allow your emotions to exist, but not to not to feed them or pursue them.
You learn to observe your mental processes in a slightly detached way, so that they don't own you.
You start off by a simple technique of labelling any arising thoughts or emotions. e.g. "that's a thought", "that's an emotion".

In my own practice, I've found it helpful to gently 'encourage' emotions to exist which means to fully allow them to be freely expressed (so, not suppressing them), and to allow them to take their own course… This doesn't mean stoking the fire or to encourage them to develop, but just to fully acknowledge your thoughts and emotions.

In mindfulness meditation, the key is not to latch onto thoughts and emotions, but to simply acknowledge them, label them as an emotion etc, and then allow them to drift on their own, not feeding into them or stoking the fire.
One useful trick I've found, in meditation practice, and in every day life, is not to be fearful of emotions. (More easily said than done!)
In my experience, being fearful of negative emotions, compounds them, and increases their power, and stops them from being understood and processed.
Not being fearful of them means to gently face them head-on without fear stopping you from doing so… To fully acknowledge them.

Obviously, this is an approach that I've found helpful at times, but it wouldn't be helpful for everyone, and I wouldn't find it helpful all the time. And as I mentioned earlier, nothing worked in terms of processing my depression, although mindfulness did help me deal with emotions that are associated with depression (e.g. guilt, fear, etc.)

For positive emotions, I try to bring enjoyable and entertaining things into my life, and this tends to bring positivity with it.
So I surround myself with things that keep me entertained…
A computer for news, videos, entertainment, online socialising, forums etc…
Books… Tasty food whenever possible… I grow some indoor plants…
A short walk whenever possible… A phone chat whenever possible and when in the right frame of mind.

I'd recommend a pet to anyone who thinks they could look after one…
My late cat was a very close companion.
She even understood the word 'cuddle', and would run ahead of me to the sofa, ready to jump onto my lap, when ever I said "do you want a cuddle?".
She brought me many many days of happiness, unexpected love and meaningful companionship… Far more than I had expected from a cat!
:cat:

Mindfulness does not necessarily require meditation, but it does require self observation. I used to be into breath meditation, but my mindfulness is largely self taught and I do it while in normal consciousness. This fits me better than meditation, I had to give up meditation in the 80s. What you do in meditation that is described as mindfulness is possible at other times, though you do have to stop and reflect. Its also something that needs practice, just like meditation.

I too have deep anger and trust issues about how we have been treated, even though I have not been treated as badly as many and so this is less about me than about all the people I have talked with. I would call it a righteous anger – it arises because of a deep sense of injustice. However these feelings can be moderated by the kind of mindfulness that Bob was talking about. I also address it as a rationalist – I am always asking the question: is how I am reacting rationally justified? Sometimes it isn't.

I am currently seeing (in real life) how someone with fibromyalgia is currently being treated by doctors. This person is being given the usual run around, and the doctors do not seem to know any of the recent science, and one missed a very important blood test that should have been done. They do however now have an official diagnosis of fibro, after being told for years they had depression or anxiety. Doctors have serious limitations in what they can do, and all too often we do not accept that, or worse, they (the doctors) don't accept that.

Doctors do not deserve to be put on a pedestal, but it must be appreciated that a lot of this is not easy. One of our biggest issues is we don't have our own specialty – though of course rheumatologists claim fibro, its now very clear that there are neurological and immune aspects to it. So fibro, ME etc. really need neuroimmunoendocrinologists as a specific certification for medical specialists, and we don't have that yet. Nor is the science evolved enough for the experimental findings we have to be fully translated to clinical practice.

Jody, I´m so sorry for what you´ve been through. I also fell through the social safety net in Canada (and received an email message saying I was lying when I posted this on another board.) I´d paid high taxes, employment and government disability premiums, but have now gone over 20 years without employment income. I think it´s important for Canadians with ME who aren´t yet on disability benefits to save their medical records, as they might be very useful when applying again in future. Medical records in Canada are often destroyed by staff. As for the friends and family we´ve lost, I´m sorry, but we must manage without them. I have some optimism though, for our future. Some ME people are managing to find ways to make themselves function at a much higher level again. The cases I´m familiar with mainly are people who live close to tropical seas or practise scrupulous mould avoidance. Thanks for your heart wrenching article and sincere best wishes to you and all sick ME people.

I used to practise a lot of mindfulness meditation before I became ill.
It teaches you to become fully aware of your emotions but to avoid feeding or escalating them.
I've kept some of the lessons with me, which can be helpful in every day life.

A key part of mindfulness meditation is to allow your emotions to exist, but not to not to feed them or pursue them.
You learn to observe your mental processes in a slightly detached way, so that they don't own you.
You start off by a simple technique of labelling any arising thoughts or emotions. e.g. "that's a thought", "that's an emotion".

In my own practice, I've found it helpful to gently 'encourage' emotions to exist which means to fully allow them to be freely expressed (so, not suppressing them), and to allow them to take their own course… This doesn't mean stoking the fire or to encourage them to develop, but just to fully acknowledge your thoughts and emotions.

In mindfulness meditation, the key is not to latch onto thoughts and emotions, but to simply acknowledge them, label them as an emotion etc, and then allow them to drift on their own, not feeding into them or stoking the fire.
One useful trick I've found, in meditation practice, and in every day life, is not to be fearful of emotions. (More easily said than done!)
In my experience, being fearful of negative emotions, compounds them, and increases their power, and stops them from being understood and processed.
Not being fearful of them means to gently face them head-on without fear stopping you from doing so… To fully acknowledge them.

Obviously, this is an approach that I've found helpful, but it wouldn't be helpful for everyone, and I wouldn't find it helpful all the time. And as I mentioned earlier, nothing worked in terms of processing my depression, although mindfulness did help me deal with emotions that are associated with depression (e.g. guilt, fear, etc.)

For positive emotions, I try to bring enjoyable and entertaining things into my life, and this tends to bring positivity with it.
So I surround myself with things that keep me entertained…
A computer for news, videos, entertainment, online socialising, forums etc…
Books… Tasty food whenever possible… I grow some indoor plants…
A short walk whenever possible… A phone chat whenever possible and when in the right frame of mind.

I'd recommend a pet to anyone who thinks they could look after one…
My late cat was a very close companion.
She even understood the word 'cuddle', and would run ahead of me to the sofa, ready to jump onto my lap, when ever I said "do you want a cuddle?".
She brought me many many days of happiness, unexpected love and meaningful companionship… Far more than I had expected from a cat!
:cat:

I have developed something like mindfulness over the years, but I sometimes wonder whether it is more due to mellowing with age! One emotion that can be impossible to acknowledge fully is grief, as it can be so painful.

Cats – love them, and they can be extremely companionable and affectionate, as well as making me laugh. For me, they make a house a home. I would not want to live without cats.

Subvert- to overturn or overthrow from the foundation : ruin. 2. : to pervert or corrupt by an undermining of morals, allegiance, or faith………..

As I read this definition my mind reels with the implications. I usually feel responsible for whatever happens to me, you take the cards you're dealt and after that it's up to you. So I got ill and….so.. I.. deserve to be ostracised and face the rest of my life as an outsider?

Well No…..I grew up in a European social democracy and think it is an efficient and good way to run a complex society, a balance of rights and responsibilities with some accountability. It promotes a social responsibility where membership of the society is valued for what it gives to all it's members. These societies grew out of the horror of the world wars and the knowledge that gross inequallity breeds violence and brutality.

We have forgotten, we have been duped. I live surrounded by Thatchers children and the crass vulgarity that there is 'no such thing as society'. Most of us are on the treadmill, running to stay still; those of us less able to run fear dropping off the end.
A piece attributed to Martin Niemoller seems relevantFirst they came for the communists,
and I didn't speak out because I wasn't a communist.Then they came for the socialists,
and I didn't speak out because I wasn't a socialist.Then they came for the trade unionists,
and I didn't speak out because I wasn't a trade unionist.Then they came for me,
and there was no one left to speak for me.Then they got rid of the sick, the so-called incurables. – I remember a conversation I had with a person who claimed to be a Christian. He said: Perhaps it's right, these incurably sick people just cost the state money, they are just a burden to themselves and to others. Isn't it best for all concerned if they are taken out of the middle [of society]?

We have been here before We thought that we lived in a society that cared we discovered that we didn't, it is not just our lives that have been subverted, it is our society; our changing status merely highlighted the fact.The contempt and disregard shown to us, 'the incurables' is nothing new it was mediated by medicine then as it is now.. What was once ameliorated by a sense of moral duty will now be tempered by technology.When they can sell us a cure we will once more be included.Subvertion seems to describe a process of physiology, of relationship with peers, with authority and of a group within society.Gordon Bennet Jody, you picked a word there.

I'd recommend a pet to anyone who thinks they could look after one…
My late cat was a very close companion.
She even understood the word 'cuddle', and would run ahead of me to the sofa, ready to jump onto my lap, when ever I said "do you want a cuddle?".
She brought me many many days of happiness, unexpected love and meaningful companionship… Far more than I had expected from a cat! :cat:

Hey Bob,

I enjoyed your story and some of your reflections about your late kitty. Thought you might appreciate the following quotes from the author of the book, "Animals are Soul Too".

If you have a pet, you are aware of the bond of love between yourself and your pet. This bond of love exists because you are Soul – a particle of God sent here to gain spiritual experience. Ultimately, to learn how to give and to receive divine love.What most people don’t realize is their pet is also soul. Animals are soul, too.Soul exists because God loves It. It’s very simple. And when two souls set up a bond of love, it is stronger and more enduring than eternity. It doesn’t matter if the two souls are human beings or if one of them happens to be a bird, a dog, a cat, or another animal form….

Does anyone else notice that they have to pace their emotions as well. ? I always know when my ME is deteriorating as I start feeling very tearful.

I find I can only allow myself to cry for a wee while otherwise it inflames my ME even more, same as all the other emotions anger, etc

Hi rosie26–I have become aware that there are three kinds of emotion at work in me: one is emotion in response to experiences I have in present day life that evoke various feelings, and that I would have even if I wasn't ill, second is emotion that is the result of past trauma, which was repressed and is coming up to be processed and released, and the last is emotion that is actually caused by my illness and by the imbalances in my brain and nervous system, due to viral and environmental toxins. Unfortunately the three of these can sometimes get all mixed up together, and that definitely makes things complicated.

What I've seen in observing the dynamics of my emotions over the years is that when I feel more "normal" and not as ill, then my current day emotions pass through me like weather… They come and they go, and it's easy to feel them, respond to them, and move with them, without having them get "stuck" in a recurring loop in my mind.

The emotions of past trauma are more difficult to deal with. They require a clarity that I often don't have on my bad days, but putting them off to a good day doesn't always work. As I have witnessed many times now, emotions come out when they are ready, and not necessarily when I am ready for them. When this happens, I end up painting my way through them, and that helps me process the trauma emotions better than anything else. Of course, therapy can also be helpful at those times, but that costs considerably more money than painting supplies and isn't nearly as satisfying.

The emotions that are caused by my illness are the worst and the most difficult to process, mainly because I start thinking that I need to process them… :aghhh: and confuse myself into a whole lotta trouble with that. In those moments pacing and distraction seems to be the best antidote, along with certain supplements and herbs that help to ease the discomfort in my brain. Until my brain gets into a better place, these kind of emotions will just keep churning away. I have made a note to remember that, and to try to not get too identified with them.

It would be SO NICE if this was simpler, but at least I'm getting better at discerning what's what in the emotional weather forecast of each day. Just knowing that is often a big relief.

Thanks Dreambirdie xx you put that very well, I will use that bit information, thanks for already thinking that one through so well. I think when the 3 emotions (past, present and emotion caused by illness) are all happening together I will recognize it in future and distract as it is too complicated to work out especially for our brain when in ME deterioration. xxx

I have read this before. Some of the commentary is interesting too. That this can happen at all is a real problem. Medicine by political ideology stuffs up everywhere I see it, though to be fair I probably see it only where it stuffs up.

Amen!! Jody – I was never a big reader before I became ill. It might seem odd, but I find it refreshing to read a lot of the fitness magazines just to remind myself what my body used to be capable of and possibly again someday.

Many of the travel articles and interview articles of many of the people that you probably will not see interviewed anymore help take my pain and sick feeling away. Occasionally, there will be an article that is science related that may touch base on our plight for a cure or just some relief.

Read a recent article about 4 college graduates that adopted wild Mustangs and recruited experienced guides and trail riders. They are going to ride from Arizona to Montana on Public Land through the Grand Canyon and Yellowstone. They are also wanting to bring attention to the approx. 47,000 Mustangs just corralled in pens so they will not graze on grass land used for private cattle ranchers and the approx. 37,000 still roaming free. Going on a trip like that just occupies my mind for a long time.

Recently read a wonderfully written article and interview about Keith Richards of the Rolling Stones which was a period in which I grew up in and it brought back memories of times when I could enjoy myself.

The pain that hurts the most was not being able to be a critical part of my children's life and not being able to save my marriage.

So, yes it really hurts to be all alone to a horrid disease that for the most part is shunned by the medical community and I really believe many of them are afraid of tackling the vast amount of research that will be needed to cure many of the diseases with unknown etiologies.

At some point the socialized medical programs in the world will have to address research very had instead of just treating symptoms to feed big pharma.

the article you wrote, jody, is great. and the comments are even more powerful. so sad to read it all. i think of myself, of course, because i can relate to much of it, and also my bedridden friends who are often on the verge of either death or suicide due to this disease. and i think of my friend who did in fact take his own life after 17 yrs with me/cfs. (rest in peace, sweet patrick. i'm thinking of you right now.)

the article you wrote, jody, is great. and the comments are even more powerful. so sad to read it all. i think of myself, of course, because i can relate to much of it, and also my bedridden friends who are often on the verge of either death or suicide due to this disease. and i think of my friend who did in fact take his own life after 17 yrs with me/cfs. (rest in peace, sweet patrick. i'm thinking of you right now.)

"I read once, and have come to believe, that the consequences of holding onto “justifiable” anger are no different than holding onto unjustifiable anger. The body, mind, emotions, etc. are pretty much affected similarly, and not in a good way.

Speaking for myself only, I’ve realized that holding onto any kind of anger is akin to “an expensive luxury”. It may make me feel better temporarily, and perhaps even give me a sense of recovering a power lost, but I’ve generally found these to be fleeting experiences. Even more importantly for myself, I’ve come to a firm belief that if thinking of somebody causes me to become angry, and/or disturbed in any manner, then I’m in a sense giving them control over my life. This is the very last thing I want to do, especially since some of these kinds of people have the profile of an “energy parasite”, who often, whether consciously or unconscsiously, try to feed off of others’ anger."

I agree entirely. Some say that we need anger, even if it is for others before we will take action but I don't know about this. As you say, our bodies don't know if the anger is righteous or not (nor whether laughter is real of forced). For me the solution must be spiritual.

Thanks, Jody for an excellent article which must have been painful to write.

Like you I have become more politically aware since becoming ill, and I am horrified by the attack on humane values that is going on in all Western societies at the moment.

To be sick is not a crime, so why the attempt to portray the sick as hateful. In a capitalist society to be economically inactive is to be despised and unwanted. These attitudes have arisen before and always led to politically driven crimes against the citizen.

Amen!! Jody – I was never a big reader before I became ill. It might seem odd, but I find it refreshing to read a lot of the fitness magazines just to remind myself what my body used to be capable of and possibly again someday.

Many of the travel articles and interview articles of many of the people that you probably will not see interviewed anymore help take my pain and sick feeling away. Occasionally, there will be an article that is science related that may touch base on our plight for a cure or just some relief.

Read a recent article about 4 college graduates that adopted wild Mustangs and recruited experienced guides and trail riders. They are going to ride from Arizona to Montana on Public Land through the Grand Canyon and Yellowstone. They are also wanting to bring attention to the approx. 47,000 Mustangs just corralled in pens so they will not graze on grass land used for private cattle ranchers and the approx. 37,000 still roaming free. Going on a trip like that just occupies my mind for a long time.

Recently read a wonderfully written article and interview about Keith Richards of the Rolling Stones which was a

period in which I grew up in and it brought back memories of times when I could enjoy myself.
August—-
Sometimes leaving a marriage saves you!!!!!

San Diego #1

The pain that hurts the most was not being able to be a critical part of my children's life and not being able to save my marriage.

So, yes it really hurts to be all alone to a horrid disease that for the most part is shunned by the medical community and I really believe many of them are afraid of tackling the vast amount of research that will be needed to cure many of the diseases with unknown etiologies.

At some point the socialized medical programs in the world will have to address research very had instead of just treating symptoms to feed big pharma.

All sections of the Phoenix Rising website are compiled by a layman. They are not a substitute for a physician and are for informational uses only. Please discuss any treatments in these pages with your physician.